What We Can Learn From Williams Syndrome

The only exposure I’ve ever had to Williams Syndrome was an episode of Law and Order: SVU. A child witnesses her mother’s murder, and it is her savant-like qualities that help the detectives solve the case. Since then, the illness had only come into my consciousness when I encountered a particularly friendly person. Would this person have Williams Syndrome? I never explored it much further until recently.

I was listening to the New York Times Book Review Podcast, and an interview with the author, Jennifer Latson, popped up. I knew I had to reserve this at the library ASAP, and I was so glad when the book came in within a week.

The book is one-part investigative journalism, one part biography. The biographical piece is based on the life of Eli, a young man with Williams Syndrome, and his mother, Gayle (names have been changed to preserve anonymity). Williams Syndrome is a genetic disorder, characterized by physical characteristics (wide smile, short nose, blunted forehead), social characteristics (indiscriminate social connections- the “pathological friendliness” in the subtitle), and medical characteristics (heart problems like aortic stenosis, and difficulties with weight).

We have the privilege of witnessing Eli’s journey with Williams Syndrome, from diagnosis to his teen years. Gayle is very candid with the author, talking about her fears for Eli’s safety, and some of the more embarrassing moments of having a child with no social filter. While reading, I wanted to climb into the book and give Gayle just an hour or two for time to herself. Even moments when she could try to relax (often with other caregivers of children with Williams Syndrome) were usually tainted with the kind of worry that seeps into your bones.

In a time of extreme hate and prejudice, we can learn a lot from Williams Syndrome. Latson cites the work of Robert D. Putnam, author of this book. In a 1964 study, Americans were asked to answer the statement “Most people can be trusted.” 77 percent agreed. When this study was repeated in 2012, only 24 percent agreed. YIKES. When did we stop trusting people?

People with Williams Syndrome are the only known group of people who show no racial bias. Even as young children, we tend to show a preference for our own ethnic group. Makes sense right? We feel safe with what is familiar, and we’ve probably been more exposed to our own ethnicity/race via family and friends. What can we learn from a group of people, for whom pure compassion is organic? Quite a bit, I would guess.

These statements are not to minimize the struggles of this rare disorder. I had several tearful moments on the train and work shuttle bus, crying while reading about Gayle’s struggles, and moments where the community came together to provide support for Eli, and others with Williams Syndrome.

I can only hope that more books are published like this, for both Williams Syndrome and other illnesses. We can only grow our sense of compassion for others when we hear their stories.